Jo-Ann Robotti

REPORTER FILE PHOTO | An adult female black-legged tick. Sometimes referred to as a deer tick, this species can transmit Lyme disease.

This is the second installment of a two-part account of a forum on tick-borne illnesses in Sag Harbor on August 19 at the Bay Street Theatre. The forum, “Lyme Disease in the Hamptons — What You Need to Know,” was presented by Time For Lyme, Inc. The four panelists were Time for Lyme co-founder Diane Blanchard; George P. Dempsey, M.D., a family practioner in East Hampton; Darin G. Wiggins, M.D., chairman of the Department of Emergency Medicine, Southampton Hospital; Benjamin J. Luft, M.D., chairman of the Department of Medicine at Stony Brook State University. Part I appeared in last week’s issue.

Through his highly graphic slides, Dr. Dempsey sought to reassure the audience that “not every insect bite is a tick bite and not every tick bite carries disease.”

A tick bite rash usually doesn’t hurt, it is not that itchy, the area tends to be warm and the bite site gets progressively larger. “If the rash lasts more than two or three days and is larger than a silver dollar, then it could be a tick,” he said. While the bull’s eye rash is believed to be the hallmark of Lyme, Dr. Dempsey was quick to point out with slides that there is a wide range of rash-like manifestations.

“We don’t see a lot of classic bull’s eye, but splotches and blotches, some faint, some dramatic. There is a new theory emerging that says that different strains are producing different rashes which can certainly complicate the diagnosis.” Again, he emphasized that the thing to be aware of is a rash that changes and enlarges over time.

STAGES OF THE DISEASE

Darrin Wiggins graduated from Columbia University College of Physicians and Surgeons, completed his internship and residency from the Medical College of Pennsylvania and is board certified in emergency medicine. He often returns to his alma mater to lecture on Lyme and other tick-borne diseases. “The students at Columbia teach me about guns and knives and I teach them about ticks,” he said. “But it’s a little like teaching them about mythical creatures; they don’t believe they exist.”

Echoing Dr. Dempsey’s remarks, Dr. Wiggins stated that “avoidance and prevention is 90 percent of the battle; if you don’t get bitten, we don’t have to treat you.” But people out here do indeed get bitten. A half of one percent of Southampton Hospital’s 24,000 emergency room visits are tick-related, or put another way, one case every other day, he said.

Lyme can be broken into three stages, he said: Stage I is easily diagnosed and treated and involves a localized infection; 50 percent of Stage I patients have flu-like symptoms, others have no symptoms at all. In Stage II, the disease begins to infect other organs and facial palsy may result. Stage III is late, untreated and may result in cardiac issues.

“In Southampton, a facial palsy automatically signals Lyme unless proven otherwise. Southampton lab personnel are trained in parasite readings and we get two independent lab techs to read each test,” Dr. Wiggins explained. In addition to Lyme, the hospital frequently sees anaplasmosis and ehrrlichiosis, both of which are reliably diagnosed with blood tests, and babesiosis, now dubbed “Long Island malaria” because it causes fever, chills, sweats and rigors.

Finding a “tiny little tick” on your body usually means that there is no disease, Dr. Wiggins asserted. “As they feed, they grow. It’s the big ones that have become engorged that you have to worry about.” Nymphs are less likely to be infected but more likely to cause Lyme because you don’t see them. “Adults are more likely to be infected but more likely to be found.”

BLOOD TEST UNCERTAINTIES

Benjamin Luft, the program’s final presenter, brought the focus around to the future. “This is a continuously emerging and diverging disease,” he said. “Complicating its diagnosis is the fact that no sub-specialty has developed to deal with this complex disorder. It’s like the parable of the blind men and the elephant: each specialist that you consult sees — and treats — something different.”

Dr. Luft’s research into the molecular biological structure of antigens of the Borrelia species, known to cause Lyme disease throughout the world, is aimed at developing sensitive, specific and user friendly diagnostic tests, as well as the development of possible vaccine candidates. The gold standard in testing would be “like a home pregnancy test for Lyme,” he said. It would be widely available, easy to use, inexpensive and reliable.

“The current blood tests are only accurate 30 to 70 percent of the time. Or put another way, they are inaccurate 30 to70 percent of the time. That level of accuracy is unacceptable. If all diagnostics were that unreliable, we’d all stop seeing doctors.” Dr. Luft’s research, which Time for Lyme has helped support, has led to the development of a vaccine that is currently in human trials in Europe.

The program concluded with a question and answer session. According to Dr. Dempsey, it is “not clear that this disease is ever completely eradicated” in the body and “the level of diagnosis and care is highly dependent upon the locale where you are treated.” Places such as the East End and Connecticut are more likely to have medical personnel who are knowledgeable about tick-borne diseases, increasing the chances of early diagnosis and treatment.

While opinions differ as to how aggressively to treat patients with antibiotics, Dr. Luft said that “one always needs to weigh the risk of treatment with the risks of the disease. Some patients are willing to adopt a wait and see attitude, others are not.” In the end, however, he said, “the only wrong course of action is for a doctor to blow it off.”

In sum, all panelists agreed that awareness is the most powerful preventative tool that currently exists. “Ticks love to hide out in creases and warm, wet areas,” said Dr. Luft. “After you’ve been outdoors, enlist your nearest and dearest to examine behind your knees, your groin, your crotch, hair line and armpits.”

Dr. Dempsey concurred. “We like to say that the bite you see is not the one that gives you the disease. It’s the one you don’t find that will make you sick.”

The Time for Lyme website (timeforlyme.org) has extensive information about tick-borne diseases, including guidelines for tick removal, disease signs and symptoms, diagnostic, testing and treatment issues and prevention tips, as well as information on current research projects.

REPORTER FILE PHOTO | An adult female black-legged tick. Sometimes referred to as a deer tick, this species can transmit Lyme disease.

This is the first installment of a two-part account of a recent forum on tick-borne illnesses in Sag Harbor. Part two will be published Wednesday.

Bitten by a tick as a child during a summer stay in Bridgehampton, Ally Hilfiger began experiencing full-blown flu-like symptoms and joint pain by age seven. Over the next 11 years, she was diagnosed by different doctors with diseases ranging from arthritis to fibromyalgia and multiple sclerosis.

“I spent a lot of my life in what is called the Lyme Fog,” Ms. Hilfiger told an audience of 100 people attending a forum on Lyme and other tick-borne diseases in Sag Harbor last Friday. “Nothing helped with the pain or the disorientation.”

At age 19, she saw a psychologist in Connecticut who said “this sounds like Lyme.” Earlier blood tests for Lyme, she recalled, had been “marginal or inconclusive.” With this diagnosis, however, “which included a co-infection” with babesiosis, she embarked upon a seven-year regime of antibiotics and IV drips.

She has been symptom-free for the past year. “I believe I went through this so I can stand before you and spread this message,” she said. “You must be an advocate for this disease. You must also know that tests can be wrong and doctors can make mistakes. You know your body and when things aren’t right you need to trust your instincts.”

The forum, “Lyme Disease in the Hamptons — What You Need to Know,” was presented by Time For Lyme, Inc. on August 19 at Bay Street Theater. Four panelists provided detailed information on the disease, including updates on the latest research, common misconceptions, prevention strategies and a personal story of mis-diagnosis.

Time for Lyme is a non-profit organization based in Greenwich, Connecticut, the mission of which is to fund and promote outreach for Lyme and other tick-borne diseases. According to co-founder Diane Blanchard, the group is dedicated to increasing awareness of the diseases through education and prevention programs.

The purpose of Friday’s program, Ms. Blanchard told the audience, was “to introduce you to some very important resources right here in your own community.”

The panelists included George P. Dempsey, M.D., a family practioner in East Hampton who has been studying Lyme among his East End patients since 2000; Darin G. Wiggins, M.D., chairman of the Department of Emergency Medicine, Southampton Hospital; Benjamin J. Luft, M.D., an academic physician, researcher and chairman of the Department of Medicine at Stony Brook State University, who is involved in research on the disease; and Ms. Hilfiger, the Time for Lyme spokesperson who told of her long struggle with the disease. The panel was moderated by Dr. Luft.

“My goal is to make Lyme disease manageable for those who live out here,” said Dr. Dempsey. While Lyme was first diagnosed in 1975 in Lyme, Connecticut, Dr. Dempsey said that records show that a Dr. John Walker wrote about Lyme-like symptoms on an island off the coast of Scotland in 1764. And Pliny the Elder, who lived between 23-79 A.D., wrote “Ticks: the foulest and nastiest creatures that be.”

CO-INFECTIONS COMMON

There are now some 10 tick-borne diseases that have been identified and at least 32 percent of infected ticks carry more than one pathogen, making co-infections like Ms. Hilfiger’s very common, Dr. Dempsey said. Spring is the most active time for nymphs and is the time, he said, “when we see the most disease.” Nymphs tend to be down low, in leaf mulch and other warm, moist areas. Adult ticks, on the other hand, are capable of jumping and are often found in high grass or on animal trails. “They have a highly developed sense of smell and wait for an animal, such as a deer, to come by and then jump on it.” In general, ticks do not like dry environments, windy settings, beaches, rocks and pebbles, which is a good list of landscaping “do’s” that will help minimize the tick population on a property.

Through his highly graphic slides, Dr. Dempsey sought to reassure the audience that “not every insect bite is a tick bite and not every tick bite carries disease.”

A tick bite rash usually doesn’t hurt, it is not that itchy, the area tends to be warm and the bite site gets progressively larger. “If the rash lasts more than two or three days and is larger than a silver dollar, then it could be a tick,” he said. While the bull’s eye rash is believed to be the hallmark of Lyme, Dr. Dempsey was quick to point out with slides that there is a wide range of rash-like manifestations.